Hi "Sunshine" - how fortunate are your parents to have you as their support carer, housekeeper, chef, chauffeur, counsellor! And even though this must be very hard at times, you are right in thinking that you are in a position to be able to create new memories that will be wonderful for you to reflect on when your mum has gone and your dad has perhaps slipped further into dementia. I was privileged to spend time with my mother before she died and felt truly blessed that even though we both knew she was dying, we were able to share our deepest feelings with each other. But please, do make sure you too have some support as without that, you run the risk of burn-out and then you won't be able to help your parents. Give me a call if you'd like to find out about the Life Force Carers & Bereavement support group or contact Carers Australia to see if there are any support groups near you.
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I recently read an article about collective trauma in relation to how people who lived through Melbourne’s months-long lockdown have been affected.
What struck me on reading this is that “collective trauma” could well be a definition for what cancer patients, survivors and their families and loved ones experience. No one who hasn’t been to that same dark place can truly understand the damage done to the cancer patient’s equilibrium, sense of self and trust in their own bodies. People close to them, principally carers, are also strongly affected.
Many cancer patients struggle to overcome feelings of terror at the thought that they might die, or that they will never work again, or no one will love them anymore because they look different. Those who survive often doesn’t understand why they can’t go back to being how and who they were before their diagnosis. Family, friends, colleagues and employers can sometimes become impatient with them for not simply getting on with their lives.
Once you’ve had cancer, your life will never be the same again and there is a grieving process that needs to take place regarding the loss of your BC (before cancer) life. Your hopes and dreams may have been dashed – perhaps you are now infertile, or you’ve lost your dream job or your plans for an exciting retirement have been squashed. Or you could struggle to come to terms with changes in your physical appearance and feeling exhausted all the time. This might be because a body part has been amputated, life-saving surgery may have left disfiguring scars, you could suffer a permanent disability as a result of cancer treatments and your energy levels may never get back to what they were pre-cancer.
Life Force, the Cancer Foundation that I work with, recognises the trauma that a cancer diagnosis can cause and runs weekly support groups where cancer patients and survivors can share with others who genuinely ‘get‘ how they feel about their experience. There is something about the shared experience that can be incredibly healing. There is no quick fix and it sometimes takes many months, if not years, for people to eventually feel that they have come to terms with their new reality. But when they do, there is an enormous sense of relief, gratitude that they are still here to make a new, albeit different, life and the ability to embrace the future.
For those whose illness is terminal, having somewhere to share everything they feel about that is absolutely vital, especially if their families refuse to discuss the possibility of death.
It is essential for your daily well-being to find people who are comfortable allowing you to be truly authentic when talking about how devastating chemo and/or radiotherapy is or was; how frightened you are that your cancer might return; how blindsided you are by people who simply disappeared from your life; or enraged that you got cancer in the first place when you’ve always lived a very healthy life but now you’re told that you’re not going to survive. To be able to express everything you’re feeling, without worrying that you might be upsetting those close to you or be told that you shouldn’t feel that way is empowering. If we simply push the uncomfortable feelings down, they don’t go away and there is a very real risk of becoming stuck, which can hinder the recovery process and definitely impact on the quality of everyday life.
Life Force group facilitators have had their own brush with cancer, so can genuinely relate. If you would like to join our Zoom support groups (one for patients & survivors and a separate bereavement/carers group, please visit Life Force’s website: www.lifeforce.org.au.
Cancer Survivor | Life Force Foundation Counsellor and Support Group Facilitator
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Hello Dee - I echo what Jilly said. I'm the Jane whose phone number she has given you. I'm a breast cancer survivor (26 years!) and I can definitely relate to hating the loss of control, especially (and surprisingly at the time) after my chemotherapy finished. I couldn't understand why I felt so powerless and adrift. Luckily for me I found Life Force and honestly believe that attending my support group saved my life. I went on to qualify as a counsellor and have been facilitating Life Force support groups for 20 years. Since Covid hit, we have run our groups via Zoom, so no matter where you live, hopefully you would be able to join us. If you'd like to just talk to me, please do give me a call. You could email me on email@example.com. There is definitely help available - I'm the living proof of it 😊
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Hi Mandy, it made me sad to read you saying, "it's almost a grieving thing I think". There is no doubt about this - you ARE grieving the loss of your pre-cancer life. You can't turn the clock back and no matter what happens down the track, your life will never be the same again. Even if you are cured and eventually get back your old energy levels and feelings of joy, it will still be a completely different life. Parts of your body may have been surgically removed, your fertility may be compromised, your grand retirement plans of sailing around the world might no longer be possible, etc. Everyone needs to be able to grieve whatever losses cancer brings to their lives, otherwise there is no way to eventually build a different (and possibly even better) post cancer life. I strongly recommend finding a support group to join, where you are able to express all your fears, sorrows, anger, despair and so on with people who truly 'get it'. That way you don't have to worry about burdening your nearest and dearest but you must find a place where you can safely offload all those scary feelings. Wishing you all the very best.
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I agree - knowledge is key for me and I was disappointed when I wasn't warned that either having cancer and/or chemotherapy might lead to a DVT, which I developed towards the end of my treatment. I was sick of feeling that every little ache and pain was cancer-related, so when I woke up with what felt like a dead leg one morning I ignored it. I dragged myself off to work and it wasn't until after lunch, when I noticed that I could only tackle the stairs to my office one by one, that I realised my leg was really swollen and so hot you could have fried an egg on it. I rang my GP and he told me to go to Emergency immediately and he would phone ahead to let them know I was coming in. An ultrasound showed that I had a clot extending from my groin to my ankle. It took two weeks in hospital on a Heparin drip before they would let me go home again and ever since then I have questioned everything to do with my health. I make it my business to do my own research if I can't get answers that make sense to me. I realise that some people just want to do as they're told by their doctors but I prefer to know exactly what's happening and why and what unusual side-effects I might encounter. I feel much braver if I know what's what, rather than driving myself crazy by catasrophising about things. If the worst happens, I'm prepared for it and if it doesn't then that's a bonus.
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What a fantastic response from the attending doctor! It feels much better when people acknowledge what your reality is rather than offering platitudes. He was right - that day WAS sh*t for you! For him to validate that it was perfectly normal for you to be snarky in the circumstances was the kindest thing he could have said.
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Hi Bel91 - I don't think there is anything that upset me more than people telling me, "don't worry, you'll be right". I wanted to scream at them and ask how they could possibly know that! I realise that they thought they were being supportive but the most useful thing anyone ever said to me when I talked about how anxious I felt in the lead up to check-up times, "Given what you've been through, I can quite understand how frightening this feels for you. I'm so sorry you have to go through this." I strongly recommend that you look for a support group for cancer survivors in your area if that's possible, because it is in being able to share your fears and worries with others who have been or are still in the same boat as you, that will definitely help you to get through those challenging times. Where do you live?
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My type of cancer: Breast cancer - DCIS plus Grade 2 tumour, Stage 3. Lumpectomy followed by radical mastectomy then chemotherapy. My prognosis: My oncologist was optimistic, but I found it hard to believe him when only just over 60% of women survived breast cancer for more than 5 years at the time I was diagnosed. My survival time: I'm in my 25th year of survival and while I rarely think about it, I am not oblivious to the fact that I can never be absolutely certain that it won't come back. Look at Olivia Newton-John! My word of advice: Never minimise how you feel during your treatment and after treatment finishes. Find yourself a support group that allows you to be as big a mess as you need to be. By being able to be real with others who've been there and really get it, you don't have to worry your nearest and dearest with your fears, but you do need to have a safe place to express them where no one will try to 'fix it' for you. In Sydney the Life Forcer Cancer Foundation runs weekly support groups for people dealing with the emotional impact of any cancer diagnosis. I credit my Life Force support group with saving my life!
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I wonder how you are doing now, seven months after your original post? I still remember the awful feeling after I'd been waved off from the hospital when my treatment finsihed. I was grateful that the horror of chemotherapy had ended but at the same time terrified that no one was 'doing anything' now to make sure that they'd got all the cancer. I left my job six weeks after the end of treatment and a month later had a complete break-down because I didn't have a reason to get up in the mornings any longer and couldn't hide from my feelings of despair, terror, anger, etc any longer. It was impossible to explain how adrift and alone I felt and it wasn't until I found a support group that was set up mainly for people post-treatment that I gradually worked my way through all the grief at the loss of my old life and came to terms with the reality of my new life. I now facilitate support groups with the same organisation. I have written a book ("Journey to Me": http://janegillespie.com.au/book.html) about that tumultuous time and how I came through it to a wonderful new place, where I am happier than I ever before. If you would like a copy, please email me at firstname.lastname@example.org. I'm happy to let you have it for $15 post-free and could send you a PayPal invoice or give you my bank account details if you just wanted to do a Net transfer. I hope you are feeling more 'you' these days or at least more at peace with the new you. Sending love and understanding...
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.